Keep forgetting things are not normal any more!

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Goodness knows, I have written on here so often, but my head is such a mess with it all.

I think it is because all this dementia thing accelerated so quickly it took me by surprise.

My expectations of the poor ould fella are too high, I know they are, and I am finding it so hard to keep them at an ever decreasing level. I find myself snapping at him, because I cannot stand the way he is now. He keeps catching me out when he does not understand, because there seem to be 'little windows' when he is OK. For example, yesterday he whalloped me in three games of scrabble - his previously high level of functioning. Other days he can barely work out how to play the game.

Is this horrid disease one of highs and lows? Like yesterday? I know I have mentioned it before ( sorry :eek:) but yesterday he was peeing in the bathroom sink, and last night picking the dry skin off his belly and making a little pile of it besides his pillow - but at the same time was able to play and win three high scoring games of scrabble ?!?!?!:oops::oops::oops:

Am I overthinking things? I am a researcher by trade, so perhaps that is the problem - I am trying to find answers where there are not any.

It's doing my head in.......
 

karaokePete

Registered User
Jul 23, 2017
6,534
0
N Ireland
Hi @maryjoan, welcome to the land of Dementia. No passport required but bucket loads of love and patience will come in very handy.
My experience is the same as you, bad days and good days, some lapses in abilities and other abilities unchanged, I suppose it stays that way until near the endgame.

Take regular deep breaths and go as easy as you can on both of you. Find solace in the good bits. :)
 

carolynp

Registered User
Mar 4, 2018
569
0
Goodness knows, I have written on here so often, but my head is such a mess with it all.

I think it is because all this dementia thing accelerated so quickly it took me by surprise.

My expectations of the poor ould fella are too high, I know they are, and I am finding it so hard to keep them at an ever decreasing level. I find myself snapping at him, because I cannot stand the way he is now. He keeps catching me out when he does not understand, because there seem to be 'little windows' when he is OK. For example, yesterday he whalloped me in three games of scrabble - his previously high level of functioning. Other days he can barely work out how to play the game.

Is this horrid disease one of highs and lows? Like yesterday? I know I have mentioned it before ( sorry :eek:) but yesterday he was peeing in the bathroom sink, and last night picking the dry skin off his belly and making a little pile of it besides his pillow - but at the same time was able to play and win three high scoring games of scrabble ?!?!?!:oops::oops::oops:

Am I overthinking things? I am a researcher by trade, so perhaps that is the problem - I am trying to find answers where there are not any.

It's doing my head in.......

Hi @maryjoan nothing much to say I'm afraid but I'm sending you many sympathetic thought waves and enormous, enveloping, cuddly HUGS.

I'm a researcher too and I feel as you do. Whether it's our temperaments (that pushed us in the direction of researching) or whether it's habit, as a result of our career choices, I too find that I keep trying and TRYING to make sense of OH's FTD behaviour, desperate to find an overarching explanation that links the various bits together and enables me to plan accordingly and move forward. The image that comes to my mind is from the fairytale where twelve brothers are turned into swans, and the poor faithful sister (naturally) has to weave a skein of thorns to throw over the feckless dozen and magic them back to manhood. I feel I am weaving a skein of thorns, absolutely constantly, but despite my efforts it's never big enough to encompass the whole of OH's behaviour. And even the loyal sister couldn't quite do it, now I remember: one of the brothers was left with a wing for one arm, where the net had not quite covered him wholly.

I find the "on again - off again" aspect - sometimes OH seems normal (but rarely now) just so hard. I never know what I'll wake up to or what will greet me when I get back from gym. I know SO many people are so much worse off on TP and I am in the blessed early stages - but the adjustment seems to be inexorable and continuous.

To be required to help OH put his special anti-cancer skin cream on, morning and night - as well as so many other things - while aware he pretends he knows what it's for, but actually hasn't a clue - when meanwhile he can be discussing abstruse concepts with colleagues (sometimes anyway - not so much nowadays) - and then getting annoyed with me if I carefully explain something he knows/remembers AT THAT MOMENT: goodness it's so difficult.

And it does my head in, too, because I keep trying to plan for every eventuality (Should we move now to a small place I can manage better? Will I go crazy with him in a confined space? What if we miss our chance of moving, with real estate prices different in different parts of Australia - and very low in Perth, where we live? On and on I go, exhausting myself, unable to discuss it with my OH, who is the source of the whole sorry mess ... )

Somehow we have to accept there is no getting ahead of the game with dementia. But it's hard for us, both temperamentally (I suspect), and because of our work practice and experience.

I know this is no help at all but I just so wanted to express solidarity. Love Carolyn.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Hi @maryjoan nothing much to say I'm afraid but I'm sending you many sympathetic thought waves and enormous, enveloping, cuddly HUGS.

I'm a researcher too and I feel as you do. Whether it's our temperaments (that pushed us in the direction of researching) or whether it's habit, as a result of our career choices, I too find that I keep trying and TRYING to make sense of OH's FTD behaviour, desperate to find an overarching explanation that links the various bits together and enables me to plan accordingly and move forward. The image that comes to my mind is from the fairytale where twelve brothers are turned into swans, and the poor faithful sister (naturally) has to weave a skein of thorns to throw over the feckless dozen and magic them back to manhood. I feel I am weaving a skein of thorns, absolutely constantly, but despite my efforts it's never big enough to encompass the whole of OH's behaviour. And even the loyal sister couldn't quite do it, now I remember: one of the brothers was left with a wing for one arm, where the net had not quite covered him wholly.

I find the "on again - off again" aspect - sometimes OH seems normal (but rarely now) just so hard. I never know what I'll wake up to or what will greet me when I get back from gym. I know SO many people are so much worse off on TP and I am in the blessed early stages - but the adjustment seems to be inexorable and continuous.

To be required to help OH put his special anti-cancer skin cream on, morning and night - as well as so many other things - while aware he pretends he knows what it's for, but actually hasn't a clue - when meanwhile he can be discussing abstruse concepts with colleagues (sometimes anyway - not so much nowadays) - and then getting annoyed with me if I carefully explain something he knows/remembers AT THAT MOMENT: goodness it's so difficult.

And it does my head in, too, because I keep trying to plan for every eventuality (Should we move now to a small place I can manage better? Will I go crazy with him in a confined space? What if we miss our chance of moving, with real estate prices different in different parts of Australia - and very low in Perth, where we live? On and on I go, exhausting myself, unable to discuss it with my OH, who is the source of the whole sorry mess ... )

Somehow we have to accept there is no getting ahead of the game with dementia. But it's hard for us, both temperamentally (I suspect), and because of our work practice and experience.

I know this is no help at all but I just so wanted to express solidarity. Love Carolyn.

Yes, it is of help! and I really really do appreciate you taking the time to write. We are all in the same boat - it's just a pity it is the Titanic!!
I wish I could just switch my thinking head off - especially at night, when all the problems just seem so much larger and so much more....... we seem to be stymied no matter which way we turn.

I will read through your email again later, am rushing at the mo, and get back to you again......
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
Goodness knows, I have written on here so often, but my head is such a mess with it all.

I think it is because all this dementia thing accelerated so quickly it took me by surprise.

My expectations of the poor ould fella are too high, I know they are, and I am finding it so hard to keep them at an ever decreasing level. I find myself snapping at him, because I cannot stand the way he is now. He keeps catching me out when he does not understand, because there seem to be 'little windows' when he is OK. For example, yesterday he whalloped me in three games of scrabble - his previously high level of functioning. Other days he can barely work out how to play the game.

Is this horrid disease one of highs and lows? Like yesterday? I know I have mentioned it before ( sorry :eek:) but yesterday he was peeing in the bathroom sink, and last night picking the dry skin off his belly and making a little pile of it besides his pillow - but at the same time was able to play and win three high scoring games of scrabble ?!?!?!:oops::oops::oops:

Am I overthinking things? I am a researcher by trade, so perhaps that is the problem - I am trying to find answers where there are not any.

It's doing my head in.......
Another ‘me too’ moment because I feel pretty much the same, trying to talk rationally but forgetting that it is no longer possible. The mind seems to click in and out, so when it’s in you feel good and when it’s out you feel that sinking feeling. It requires a whole new mindset and approach and it reminds me of my very young children.
 

Peachez

Registered User
Jun 19, 2016
124
0
South East England
ex researcher here too... and thinking of house extension vs moving etc... my GP waved me off some time ago with the words "there is no fix" and this is now my mantra in the shower every morning... good day or bad, I now always start my day with this, and it seems to help me.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
ex researcher here too... and thinking of house extension vs moving etc... my GP waved me off some time ago with the words "there is no fix" and this is now my mantra in the shower every morning... good day or bad, I now always start my day with this, and it seems to help me.
My 'in the shower' mantra is " You can do this, you can do this"